P1589: PATIENT (PT) AND PHYSICIAN (MD) PERCEPTIONS OF THE BURDEN OF IMMUNE THROMBOCYTOPENIA (ITP) AND ITS MANAGEMENT: RESULTS FROM THE ITP WORLD IMPACT SURVEY (I-WISH) 2.0
Authors: Nichola Cooper, Caroline Kruse, Waleed Ghanima, Drew Provan, Yoshiaka Tomiyama, Ming Hou, Donald Arnold, Cristina Santoro, Francesco Zaja, Barbara Lovrencic, Mervyn Morgan, Leron Lahav, Michal Winograd, Tom Bailey, Jens Haenig, Mahnouch Georget, James Bussel
Journal: HemaSphere (2023)

Topic: 32. Platelet disorders Background: ITP, an autoimmune disease characterized by thrombocytopenia, negatively affects pts’ quality of life (QoL), including emotional wellbeing and daily activities. Studies have demonstrated this burden may be amplified by current ITP treatments. During the COVID-19 pandemic, ITP management was challenged, but it is unclear how strategies may evolve. The opportunity to discontinue treatments for pts with a stable response could reduce the burden of ITP management. Aims: To assess the burden of ITP, impact of ITP treatments and the effect of COVID-19 on management, using pt and MD data from the global I-WISh 2.0 survey. Methods: I-WISh 2.0 was developed based on previous findings from I-WISh 1.0 and surveyed pts >18 years of age with an ITP diagnosis and MDs who managed ≥3 pts with ITP. The survey was conducted from February to July 2022 in 15 countries. The surveys, developed by a steering committee (supported by Novartis) comprising expert ITP MDs and pt advocates, included questionnaires investigating pts’ QoL. Results: 1018 pts and 431 MDs completed I-WISh 2.0 (Table). 686 (67%) pts were female, median age was 46 years and 485 (48%) pts reported ≥1 comorbidity. 97% (n=956 of 987 pts that answered) had received ≥1 treatment for ITP and 811 (80%) pts were receiving ITP treatment at survey completion. 54% (554/1017) of pts reported a high impact of ITP on emotional wellbeing and 331 (77%) MDs reported a similar impact on their pts. Notably, the Patient Health Questionnaire-9 indicated that 58% (555/961) of pts were experiencing mild to severe depression. Only 16% (166/1016) were receiving professional support for emotional aspects of ITP, and MDs estimated that 19% of their pts received such support. 40% (348/863) of pts worried when they were unable to work or contribute financially, and 45% (421/936) felt like a burden. 77% (775/1012) of pts reported sleeping in the day at least occasionally, and 58% (491/855) felt their sleep quality would be better without ITP. Fatigue was a major symptom of ITP for 549 (54%) pts at diagnosis, and 399 (93%) MDs estimated that at diagnosis fatigue was at least sometimes assessed. Pts reported that ITP impacted their ability to concentrate on daily tasks, with 50% (513/1017) experiencing this sometimes and 19% (196) more than half the time. 93% (390/421) of MDs estimated that at least some of their pts have trouble concentrating because of their ITP. 313 (73%) MDs considered pt perceptions when making treatment decisions. MDs estimated that 15% of their pts have opted against ITP medication. 56% (228/413) of MDs believed that pts feel a burden from dietary changes to accommodate ITP medication, and 22% (204/939) of pts had adherence difficulties. 305 (71%) MDs reported pts were willing to pause treatment following sustained response (defined at MD discretion). Despite this, 67% (680/1013) of pts showed concern over relapsing if current treatments were stopped. During the COVID-19 pandemic, 341 (79%) MDs reported that ITP management was impacted (fewer pt visits and tests; only managing pts with severe ITP), and 118 (27%) reported it affected treatment prescription (longer course, pt administration and fewer immunosuppressants). Summary/Conclusion: ITP negatively affects emotional wellbeing, and treatments for ITP have a complex impact on QoL, leading to improvements when effective but potentially creating adherence problems and daily life disruption. As expected, management challenges were exacerbated in the pandemic. Relapse is a concern for many pts discontinuing treatment, and the value of sustained response could be highlighted to mitigate this.Keywords: Patient, Immune thrombocytopenia (ITP), COVID-19, Quality of life